This is a Russian research study into the use of Namenda (memantine) in DLB. They conducted "an open controlled 16-week trial" in 23 patients -- 14 patients who "received memantine in dosage 20 mg/d and 9 patients of a control group." They had good results: "Memantine significantly improved cognitive dysfunction throughout the study...especially due to the improvement of attention and executive functions. The reduction of fluctuations of mental status, aggressiveness, aspontaneity, disinhibition was also observed. There were no significant changes of Parkinsonian and psychotic symptoms severity. Good tolerability of memantine is noted..." Unless one of you is a Russian MD, I won't try to get the full article!
Robin

Zh Nevrol Psikhiatr Im S S Korsakova. 2008;108(5):39-46.

[Efficacy and safety of memantine in dementia with Lewy bodies.][Article in Russian]

Dementia with Lewy bodies (DLB) is a progressive disease of the nervous system manifested with dementia, parkinsonism, psychotic and autonomic disturbances. To estimate efficacy and safety of memantine in patients with clinically diagnosed DLB (according to criteria of McKeith et al., 1999), an open controlled 16-week trial was carried out in 23 patients, mean age 69,2+/-5,9 years. Patients were divided into 2 groups: 14 patients who received memantine in dosage 20 mg/d and 9 patients of a control group. A battery of neuropsychological tests, clinical assessment using fluctuation scales, scales for assessment of behavioral and psychotic disturbances, the General Clinical Impression scale were used. Memantine significantly improved cognitive dysfunction throughout the study (the mean MMSE scorer were increased by 1,5 points compared to the baseline) especially due to the improvement of attention and executive functions. The reduction of fluctuations of mental status, aggressiveness, aspontaneity, disinhibition was also observed. There were no significant changes of Parkinsonian and psychotic symptoms severity. Good tolerability of memantine is noted: only 2 patients were withdrawn from the study because of episodes of confusion on the titration phase of the trial.

PubMed ID#: 18577956 (see pubmed.gov for abstract only)

Fri Jun 27, 2008 1:25 pm

melinda

Joined: Sat Oct 27, 2007 9:16 pmPosts: 165Location: tennessee

namenda

Thanks Robin, we're in the doughnut hole, and I was thinking about discontinuing namenda which was only added because I requested it when the aricept didn't seem to be helping much anymore. You are so kind to bring us new information, and I'm grateful.

Did your husband ever try the Exelon patch? Since it's relatively new, perhaps free samples are available from the neurologist.

Fri Jun 27, 2008 1:53 pm

dorthea

Joined: Sat Oct 06, 2007 4:28 pmPosts: 781Location: LA

Doughnut hole stinks

My LO is also in the pharmacy "doughnut hole". I'm buying like crazy so I can rush through it and reach the other side. Since the Aricept didn't seem to be working, I have read on the forum that sometimes taking a vacation from the med and starting back gives it a boost to help anew. Failing that, how about the Patch of Exelon. I am very pleased with the [seeming] results of the patch and Namenda combination.
I'm still writing as the "Impostor" because my wonderful Geriatric Psychiatrist will not give me a "probable diagnosis" but he wants to treat the symptoms. Strange as that may seem, he is using the treatment plan of Dr Boeve's Continuum. He listens to me and works with me. I feel so blessed, albeit frustrated. [I know, Robin, I should be making plans for brain donation. I hear you loud and clear!!!]. If I gave a story of our life, I'm sure everyone on the forum would give me a "probable diagnosis" in a heart beat.
I discovered the LBD forum last fall. I don't know what I would have done without this site and everyone who writes. We have lived a lifetime since then---too much to talk about---but with the medicine regime I have a certain amount of peace today. I'm glancing over at the visual monitor [I have one in ever room of the house] and I see my sweetheart lying in bed doing his arm exercising. He has a full tummy and an empty bladder... listening to a talk show on the radio.

Thank you all and good luck with your efforts. I'll keep reading and learning.

_________________"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Fri Jun 27, 2008 2:19 pm

melinda

Joined: Sat Oct 27, 2007 9:16 pmPosts: 165Location: tennessee

namenda

Two weeks before his hip replacement, he became worse and there were a couple of changes in meds, one of which was the exelon patch in place of aricept. So Dr. took him off exelon and put back on aricept, then the surgery with all of its stuff. While he was in mental facility for all of that he started on namenda. It's all a toss of the dice, no way of ever knowing what helps for sure. Dorthea, my spouse was not diagnosed for sure till after surgery when he got really bad, and it was really clear. I, like you was sure 3 years before and Dr. thought maybe and treated him accordingly. Thank God for good doctors. I am so grateful for ours.

_________________Would have despaired...

Fri Jun 27, 2008 3:39 pm

raffcons

Joined: Sat Jan 27, 2007 8:38 pmPosts: 712Location: CA

We've been in the donut hole since April, and I've been struggling to pay for all of Jerome's meds. That's why we finally pushed to get him accepted into the VA health benefits program -- for the $8 prescription co-pays. Now I'll just have to fight to make sure they will prescribe non-formulary drugs (like Aricept and Namenda).

I've found myself cutting dosages on certain pills to half in order to make them last longer, if not as effectively. I've had to choose between his bi-polar meds and his DLB drugs (Aricept & Namenda). With doctor's permission, weaned him off a neuropathy drug altogether. Have stopped other meds completely because I just can't afford them right now (e.g. Provigil).

I've put the man through withdrawal symptoms and when he asks why he is feeling so much worse, I'm torn between telling him he's not crazy and he feels like crap because he is not getting all his meds, and not telling him anything so he does not get anxious about finances.

Our community has no resources for help with prescription costs, and in our area, there is no Part D provider who includes gap coverage anymore (the first years of Part D, we bought the plans with the best benefits during the donut hole period -- those policies have disappeared).

Wonder if the pharmaceuticals would consider some kind of coupon offer for use during the donut hole.

_________________Renata (and Jerome-in-Heaven)

Sun Jun 29, 2008 2:07 pm

dorthea

Joined: Sat Oct 06, 2007 4:28 pmPosts: 781Location: LA

donut hole, dreadful donut hole

Renata, when I wrote the above message, I did not mean for it to sound so flippant. I don't know any other way to deal with it except accepting what comes my way. When I said "I'm spending like crazy" it was just a way to cover up my feelings toward spending our " pitifully small" rainy day funds. I resent the fact that when I brought my loved one home from the locked down facility where the medical team worked to place him on proper medication, he seemed to be calm. I soon found out he was so overmedicated he lived in a stupor. However, I had the tools [prescriptions recommended by Dr Boeve] and it was up to me to learn how to use them to the best advantage. I studied this forum for which I will ever be indebted. Your notes have been invaluable. BUT, I find myself with a whole cabinet full of expensive meds that I think we will never use, I can't give them to Goodwill and I can't return them for credit... so... I have reached the donut hole and try not to cry, therefore I sound *. I could tell by your notes, you are struggling with your efforts to keep Jerome on an even keel. I am paying particular attention to your journey with VA.

I think I want VA. I don't want to leave the terrific medical team we have acquired. Trips to a new facility with my 89 year old sweetheart are almost impossible.

Life should not be this hard for caretakers who are willing, nay anxious, to give loving care to our ailing partners. But it is. We can only search for the best and where ever possible remain "Sunny". I think we all hide the financial struggles when we enter the space of our loved ones.

I will be watching your efforts and pray that you will be rewarded with help so Jerome will be on his full compliment of meds.

_________________"See this lady she's 85 but she's nice", This is the way my husband, Mr B., introduced me in 2006 to the people only he knew. Death due to pneumonia. Lewy Body Dementia diagnosed post mortem at Mayo Clinic in Jacksonville Florida.

Sun Jun 29, 2008 5:22 pm

raffcons

Joined: Sat Jan 27, 2007 8:38 pmPosts: 712Location: CA

My gosh, Dorthea, I didn't think your comments sounded flippant at all! When we first hit the donut hole, I was having a few good months work-wise and was "running" as fast as possible toward the other side of the gap -- just ran out of financial gas before I got there. So we do what we must, we persevere, and I know I'll get Jerome through this period of unstable meds.

Because Jerome has both Medicare and supplemental insurance coverage, my plan is to continue to use private specialists. We'll use VA for Jerome's general medicine needs and for a geriatric psychiatrist (we have none in our area so this will be a first that I'm reallly pleased about). And if the VA neurologist is familiar with LBD, that will be an added bonus since we keep going to Mayo every six months for follow-up that has been only fair in quality.

The biggest decision I've made, with Jerome's happy cooperation, is that we are going to sell our home and move from California to Indiana (don't ask why IN, it's a long story). The main reason for the move is to take advantage of the appreciation in our home's value and move to a community where the cost of real estate and the cost of living are substantially lower. I cannot let med costs put us in this situation again.

So, keep us in your good thoughts, that we can effect this move very quickly -- my concern is the emotional trauma this could trigger for Jerome, aggravatig the LBD.

Will keep you posted on VA progress.

_________________Renata (and Jerome-in-Heaven)

Sun Jun 29, 2008 6:20 pm

Irene Selak

raffcons wrote:

VA health benefits program -- for the $8 prescription co-pays. Now I'll just have to fight to make sure they will prescribe non-formulary drugs (like Aricept and Namenda).

Renata,
Glad you are able to use the VA system , without them I am not sure what we would have done with the many drugs and mounting medical bills, I will say they try to work with you the best that they can.
I have heard some of the commercials on TV from drug companies and some are saying if you can't pay for your medications contact them, not sure what it takes to get them to help but worth a try!

Sun Jun 29, 2008 7:32 pm

sythompson

Joined: Fri Feb 29, 2008 7:02 amPosts: 537Location: MI

We're also in the gap- I do a lot of begging samples from the doctors- found her family doctor had the biggest supply . Provigil I didn't luck out on but namenda I did. never hurts to beg
Sharon

_________________syt

Mon Jun 30, 2008 5:17 am

melinda

Joined: Sat Oct 27, 2007 9:16 pmPosts: 165Location: tennessee

move

Renata, You really ought to move to Tennessee. It's a wonderful place to live, and besides I'd like to meet you! melinda

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